When I went to the doc last, I wasn’t really having one of my good days, and it sounds like that clouded my perception of what happened and the advice I was given. They still haven’t gotten back the results of the JC virus antibodies test, but regardless of what it comes back as, I will continue to take tysabri. My doc explained that he doesn’t consider me to be a high risk patient for PML since I have never had any other MS drugs or anything else that could mess up my immune system. He also came as close as I think he could to saying that it would be a really bad idea to stop this particular treatment because of the outlook otherwise.
That’s a relief really. This drug has a really good record of reducing new lesions and slowing the progression of the disease. As a bonus, the side effect I have been getting from it has been me feeling better for the couple weeks after. There are now other, oral, treatments on the market now that seem to have the same effectiveness against MS, but also have more common nasty side effects like heart problems, etc. There are also some drugs that need to be injected either every other day or once a week that don’t work as well, and they have the predictable side effect of making you feel like you have the flu…
So, like I said, I’m glad I’ll be staying on this. They’ll keep monitoring me for signs of PML, but it’s still a rather rare thing. 200 people out of 50,000 have gotten it, and a significant number of them had immune suppressing treatments too. I like my chances…
I’m also going to start going to physical therapy. Not really sure what’s involved with that, but I think it’s a good idea. My muscle mass has gone down considerably in general, and in my legs especially. Thought it would be a good idea to get an actual workout plan targeting what I’ve got going on instead of me just killing myself on the bike or something. I don’t know what impact this will have with work, but it’s something I’ll have to work out.
So that’s the news, mostly more of the same, and that’s a good thing as far as I’m concerned.